The Grassroots Advocate
Anyone can become an advocate. While we can help you understand the different ways you can advocate change with your elected officials, the most important thing for you to do when you advocate is to be yourself and share your personal story about your experiences with Vasculitis.
What are some things you can you do?
Contact Your Federal Elected Officials
Be a Community Grass Roots Advocate
Your federal representatives and senators are elected to serve you. You can contact your elected official’s office in several ways, which we outline below.
Your goal is to get to know your elected official and for her or him to get to know you. Help your legislator learn about Vasculitis, the Vasculitis Foundation and important legislation.
Wondering who your elected officials are? Continue reading to find out below, or click here.
You can call your elected officials.
You can meet with your elected official in the home district, or in Washington, D.C. Make sure to call ahead. Sometimes, scheduling conflicts make it difficult to meet with your legislator; if this is the case, ask to make an appointment to meet with staff, particularly staff assigned to work on health care policy.
Consider making a family trip to the nation’s capital. Be sure to call well in advance to make an appointment to meet with your legislator.
Send a letter through regular mail. We recommend that you send a letter to the home or local office rather than to the nation’s capital because security procedures delay mail delivery in Washington D.C. Click here to see sample letters.
Send an email. Click here to send an email through the VF website.
Call your legislator.
Be sure to prepare your message ahead of time. You'll want to have your talking points all set before any communication with members of Congress.
Click here for help with your message.
Whether communicating in person or in writing, it is important to be prepared with your message and to be concise. Try and limit your letter to approximately 200 words. Letters that are too long may go unread.
Identify yourself as a constituent and provide your address.
Share your personal story so you can educate your elected official about vasculitis. Describe the hardships and life changes that you experienced. For example, if you suffered because of a delay in diagnosis, you can stress the importance of awareness, particularly in the medical community.
Consider including a picture of yourself. This help puts a face to a name. If your picture shows you experiencing the side effects of Vasculitis treatment, you may point this out in your letter and stress the need for advanced treatments.
Share some vasculitis facts. Help your elected official understand what Vasculitis is, the number of people in the U.S living with vasculitis and the importance of research funding to identify new treatments and ultimately a cure.
Be specific and ask your legislator for his or her support. Identify the bill number of any legislative initiative that requires support and briefly describe what the bill would accomplish. Ask your legislator whether you can count on support.
Always be polite and respectful. Always send a thank you note following a visit and always thank your legislator at the close of a letter.
Good luck! Thanks for taking the time to contact your legislators.
In addition to advocating for legislative initiatives, the grass roots advocate can make a difference by working in the community to raise awareness about vasculitis and advocating for improvements in the lives of people with vasculitis. Some strategies you can consider follow.
Consider joining your local Vasculitis Chapter or Support Group. If one does not exist in your area, contact the Vasculitis Foundation about starting a chapter.
Write letters to the editor of your local newspapers to raise awareness about vasculitis.
Participate in Vasculitis Foundation Awareness Week activities. The Vasculitis Foundation celebrates Vasculitis Awareness week the 3rd week of September.
Distribute Vasculitis brochures to your local medical practice and hospitals. Inquire about opportunities to participate in health fairs or other activities to educate health practitioners and the public about Vasculitis. Call the Vasculitis Foundation to request brochures.
Take action when the Vasculitis Foundation contacts you for help with an initiative. When you sign up to become an advocate, you will from time to time receive an email asking for you help. Take prompt action if necessary and requested.
Host an event to raise awareness about Vasculitis or to fundraise for the VF. Click here to download a VF handbook on “How to Host an Event."
Remember a grass roots advocate is always looking for opportunities to promote the cause and never gives up.
Let us know what you are doing. We may want to build on your efforts by sharing ideas with the membership.